Dragons and Dog Shows

This weekend has been the hottest so far in London so we decide an outdoor programme is required. We decide to stick with our plan to go Dragon Boating on Saturday. I feel we are somewhat extreme as the first time we went it was snowing and someone was taken off the boat with hypothermia and had to go in an ambulance. On Saturday it is boiling hot even before we start. I feel lazy and let other people get the boat out and then we’re in it and away we go. Ciara, our captain, works us very hard and we’re paddling away, doing exercises to improve our twist, working our legs and bottoms and making sure our start positions are right. Out on the water is slightly cooler with a bit of a breeze but every University rowing team also seems to be out there, sweating it out, most of them impossibly slim and tanned. After an hour, I am done. The boat goes into the pontoon and people swap sides and places in the boat. I say I will sit the next session out but Ciara asks if I want to sit in the back of the boat and just have a ride which sounds lovely so I accept. It’s great to sit back and watch people work and the planes taking off and landing at City Airport which is right beside the dock. Raging Dragons are also out on the water so it is decided we will race at the end. We are given a head start which is just as well as they are fast and pretty good but we paddle for our lives and I think we come in together. It’s fun, whatever. Walking away, my legs feel wobbly and I am tired but in a good way. Once we get home, we eat and sit down and an incredible feeling of calm and peace flows over me. I am in bed by 9pm.

Sunday morning dawns glorious again and we go to the South Bucks Pony Club dog show. The dog show is run by Greyhound Gap, a fabulous organisation who re-home greyhounds, lurchers and the like. There are so many dogs like Dog there, we are very happy. They have organised several competitions so we enter him for the Most Appealing Eyes, Handsomest Dog and Best Rescue. At the last moment we enter him in a lure race. They have a lure which is powered around the field for the dogs to chase. Although it is very hot, from a field away, Dog can see it and his attention is all on it. We go over and take him into the field. It is explained that the lure will go round once to excite Dog and then we can let him go and he will go like hell for leather around the field after it. Dog looks excited. The lure goes round once. He is let off the lead and immediately goes into clown routine, ambling around and saying hello to people and taking no interest in the lure whatsoever. It is very funny. In fact, it’s funny watching all the dogs whether they chase or not. They try to cut corners or else show no interest. It is very hot so we forgive Dog’s shortcomings in this department and realise again that this must be why he was dumped. He was bred by travellers for hare coursing, we think, and he shows not much interest for chasing rabbits although he has caught a couple. Now squirrels…that’s another matter.
After the shame of the lure, we go to the arena. Well, I say arena but it’s an area of the field roped off with a plastic gazebo to help give the dogs some shade. Dog enters his first class – Most Appealing Eyes – and gives the judge his best winsome look. We are delighted when he comes away with First place. Alas, it’s all downhill from there. Having won a first, Dog can’t be bothered to play the game and be the Handsomest Dog or Best Rescue although he scrapes Sixth place in the latter.

We wander off to find some food while the last classes are being judged and arrive back in time to see the penultimate class – Dog that looks most like its owner. There are only 2 entrants and we wish we had entered. Never have 2 people looked less like their dog but we know we would have been placed and then it would have been official. We have to be back for Best in Show which is very amusing. Dog has decided his best position is horizontal and he flops on the grass and can’t be bothered to show his best side. In 30 degrees, I don’t really blame him. He is not placed and so we wander off, proud of his small achievement and watch the show jumping for a while. Small children are racing round on ponies with such confidence and self assurance it takes my breath away. After a while we decide to leave and head home while there is still some afternoon to be snoozed away.

The weekend has been brilliant. I am tired but in a good way and hope for another good night’s sleep. I left my compression sleeve off today in a gesture of defiance (breast care nurse is still ignoring my request to see the lymphoedema nurse) and the heat has made my hand and arm swell so an evening of sitting quietly on the sofa watching a film is in order. This is probably the most active weekend I have had since my diagnosis. Maybe I am on the road to recovery after all.


Woo hoo! Bank Holiday!

I am absurdly excited by the forthcoming Bank Holiday. Last year, I can’t remember what we did. I do remember being in the supermarket with Mark and wondering whether Easter had happened or not. My thought processes were so scrambled from chemo and the amount of information being thrown at us that I was unable to think straight. Today, although my thought processes are still muddy, I am so much clearer and better that I am able to look forward with keen anticipation. Yes, I know I’m not working but the thought of 3 days without appointments or any other kind of distraction is very, very appealing.

Today had a good start. Thanks to the idea of one of my blog followers, I contacted my GP to ask if I could be prescribed an Acti-Glide sleeve to help me put my compression sleeve on. A day after I sent her the email, I receive a phone call from the surgery informing me there is a prescription for me. A day later and I am the proud owner of a bright blue Acti-Glide sleeve. It is made out of a kind of woven plastic and has elastic and a plastic tie. The instructions seem very simple so I try it out and hey presto! My sleeve is on magically without the sweating and carry on I have enjoyed before. I slip on my tattoo and I am ready to go (having showered and dressed first – I am not going out in just my sleeve, not even if you pay me).

Today we go to Cambridge so I can work with some researchers looking at an intervention to help people share bad news with friends, family, colleagues etc. We drive past fields full of gloriously yellow rape. The skies are dark and the contrast is stunning. We arrive at Hughes Hall and Mark and Dog decide to go for a walk while I meet the researchers and other patients. They provide lunch which is plentiful but slightly bizarre. There are sandwiches with the crusts cut off, wraps and, on just one platter, half a bagel. It looks as though lunch has been composed of left-overs but it tastes fine and it is kind of them to feed us. There are 6 of us excluding researchers, all having experience of cancer first-hand. Ann, a lady sitting opposite me, has had bowel cancer and, just before her fifth anniversary, found out she has developed bladder cancer. Her friends and family had arranged a party to celebrate her 5 years clear and she had to announce her new diagnosis. I can only guess what this may feel like and she is clearly distressed at recalling the very recent events. We discuss what sort of information might be useful but it’s difficult to imagine what anyone fresh from diagnosis may be able to take in. It’s an interesting meeting, though, although periodically I wonder about Mark and Dog as the rain lashes down outside followed by bright sunshine.

At the end of the afternoon, we leave the meeting. Ann and I swap email addresses and I find Mark and Dog in the car, waiting for me. We drive home via the supermarket where, full of Bank Holiday cheer, I run around throwing lovely things into the trolley. I plan to buy a big tub of sweets for the Chemo Suite staff as it is my final dose of Herceptin tomorrow but, amid legs of lamb, pots of fresh herbs and cream, I somehow manage to forget this completely, only remembering as we drive away.

It is one year since I began receiving Herceptin. I started the infusions in a confused and chaotic state and cannot remember exactly when the first dose was given. The only thing I remember is being given the first dose carefully and slowly in case I had an allergic reaction to it. I was bald and was being given my first dose of Docetaxel, the wonder drug made from Yew trees. Light sensitive, it is given under a protective bag to keep it dark.

This weekend will be a celebration. On Saturday we are having lunch with friends and I plan to make arrangements to fly in our friends’ light aircraft, another of my firsts. The fact that it coincides with a Bank Holiday just makes it extra special. I have been so lucky with the support and love of friends and my immediate family. I am not sure I could get through it without them.

Farewell wifi Alice

As I so often say, it’s been a funny old week. No one week seems to be like another and it’s quite disconcerting to have so much choice and potential freedom and yet to spend so much time doing stuff all squashed together. I had a dream last night where someone was explaining to me that I had something wrong with me which explained a lot about how I functioned. It was immediately one of those Eureka! moments where everything suddenly makes sense and I realise why I am how I am and that it’s actually OK to be like that. Cue reality and the dawn and none of it makes sense any more. Sigh.

We’ve been away for the weekend, spending it with friends just outside Chester. They are a lovely couple, frighteningly intelligent and funny and one of them has only one leg but I won’t tell you which. That is, I won’t tell you which one has only one leg, not which leg the individual is clinging onto. They also have unsecured wifi called Alice, which I really like. It is both generous and touching in its naivety.

The drive up was horrible. The usual ‘congestion ahead’ notices meaning cars slowed down on the M6, thus creating congestion. We received a heroes’ welcome and settled in for an evening of good food and conversation. The following morning it was sunny! An absolutely perfect day weather-wise was matched by a lovely day travelling around bits of Wales. At an aqueduct, we marvelled at the feat of engineering and daring thought that had created it and then watched a party of inebriated young people steer a narrowboat into the side of the canal and come to a sudden stop, causing lots of the young people to fall over. This I enjoyed very much although wished they weren’t quite so inebriated or rowdy. They then proceeded to tether the boat, firstly to the side of the canal opposite a junction, causing a canal official to tell them “You can’t park here” and then to the other side where they all jumped ship and picnicked at the side of the canal. They must have travelled all of 100 yards in their boat. But the weather was spectacular and I caught the sun. Mental note to buy high factor sun cream now we have had one day of hot sun this spring.

We also went to Plas Newydd, a beautiful house owned by 2 female friends in the early to mid nineteenth century. There was much speculation about the sexual orientation of the two friends who seemed to want to live the idyllic Romantic life, away from society. They lived on very little but had a considerable number of very wealthy and influential friends who visited them, bringing gifts, money and pieces of carved oak from around the world. They patched it together and had it installed around the house in an amazing patchwork of styles. They also salvaged stained glass and had it soldered together in leaded windows, creating an amazing rainbow of colour. Having run away together from Ireland, causing a huge stir in the process, they were horrified when a female friend, having lost her ‘special friend’ to a convent, asked if she could come and live with them. They favoured masculine clothing and did not like sitting for portraits so the only ones available are those done somewhat furtively. They seemed to have been huge celebrities in their time although it seemed their lifestyle was the thing they were most celebrated for.

This week is going to be another busy one. Despite my intention to do things slowly, have time to relax and rest, I seem incapable of clearing my diary for a week. My mind is racing way ahead of my body most of the time so I am hoping my body will catch up. The bloody lymphodoema compression sleeve is mis-behaving in that it keeps rolling down. It’s at this point I remember the nurse saying “It mustn’t roll down or you might get a blood clot” so will be going back to the hospital to show them the recalcitrant sleeve and see whether they can provide a better behaved one. Fran suggests they make them with the slightly sticky rubbery stuff you get on the inside of hold-up stockings. I think this is a good idea so may enquire if they have such a thing. The tattoo sleeves have proved a massive hit and once I have a compliant sleeve, I will post photos.

Where is Spiderman when you need him?

Oh, back to the compression sleeve. I decided to take Sundays off on the grounds that I am not perfect and the sleeve is very disturbing to wear. It takes me ages to put it on and I am unable to settle the band at the top properly without help. Today is a classic example, even though I have only had the wretched thing a week. Mark has gone out early to a meeting so I have to put the sleeve on myself. I need at least 6 hands. I struggle and sweat over it. It takes me about 10 minutes to get it fully up my arm by which time I am hot and very, very cross. Then it does something which is already so familiar and depressing. The top begins to roll down. This is something I have been told categorically MUST NOT HAPPEN or I am at risk of developing a blood clot. I need braces for my compression sleeve. I feel I need to sellotape around the top to keep it flat except, of course, that would be more pressure and may lead to – and I sense you’re ahead of me here – a bloody clot.

No-one tells you the end of the story when you develop cancer. Probably because the stories end so differently and, don’t get me wrong, I’m very happy my story isn’t over yet but I didn’t understand any of the possible stages after the first wave of terror had subsided. I thought six months of treatment would sort me out. I’d lose and then regain my hair, put on a bit of weight, have surgery and radiotherapy and that would be it. But my body is left very damaged from the treatment and I hadn’t expected that. Surgery, I knew, because I’m not a bloody idiot, would leave me looking different and that was surprisingly OK. Surgery itself was vile and I still have nightmares about the drain that got stuck and took 2 nurses and a lot of morphine to pull it out. The change in my body shape was OK, too. I’m not really a vain woman so it didn’t bother me too much. I didn’t understand how the treatment would delay healing so much and how damaging and invasive radiotherapy would be. I guess you could say I had a pretty bad time last year and, don’t get me wrong, this year is going to be way better but it’s also not going to be the same as I expected. I suppose that’s true for everyone, though. Life isn’t always what you expect and has ways of tripping you up and surprising you for the better or worse, in equal measure.

So I sit here with my compression sleeve doing its own thing and I wonder if there is a kitchen implement I could use to settle the top. A spatula? Tongs? I could stop a passer by and ask. Or I could develop another 4 arms and do it myself. Sigh. Where IS Spiderman when you need him?

Here comes the sun

I am becoming new and improved every day. Every day, in every way I am getting better and better. Or something. Today was the acquisition of the much awaited compression sleeve and gauntlet. Mine is a snazzy all-in-one, caramel in colour, naturally, and very tight. It runs the entire length of my arm, from just beneath my arm pit stopping around the knuckles on my left hand. Hand-washing is very difficult. If I ‘get on with’ this one, I can have another one. I can wash it gently but mustn’t leave it to dry on a radiator. After it was fitted, I whipped my tattoo sleeve out of i’s bag and began to put it on. The man who was helping me – I don’t know his exact title – was surprised. “I’ve never seen one of those before” he said. I explained I didn’t want to be controlled by my sleeve but meant to have some fun with it as I have to wear it. He nodded approvingly.

This afternoon was the formation of the new singing group at Maggie’s. It’s only for 4 weeks but I thought it would be fun. An amazing amount of people I had never seen before came and we sat in an awkward L-shaped room while a very nice man put us through our paces. We did breathing exercises, panting. yawning, tapping and clapping. Eventually we separated ourselves into groups – soprano, alto, tenor and men. Our choir master has decided we should sing ‘Here Comes the Sun’ which is fine by me. The problem is, some ladies in the group can’t understand that you should only sing your own part, not the part of every group. It leads to endless confusion when, say, the tenors are singing their part and women from the soprano and alto sections are singing along. I clearly need to be more tolerant and possibly buy some earplugs.

Waiting in the car park for Mark to arrive, a woman I have never met before accosts me. ‘Wasn’t it fun?’ she asks. We discuss what we liked about the afternoon. ‘As soon I saw you come in, I thought “she’ll be a right laugh”‘ she tells me. ‘You came in with your tattoo, chatting with people and I thought you looked amazing’. How fascinating to see onesself through the eyes of others. We discuss our various cancers. Her tumour was 11mm and she had had it removed. She is due to start chemotherapy on Friday. I tell her I had chemotherapy before surgery. ‘Was that to shrink it?’ she asks. I tell her yes. ‘Did it work?’. I tell her it shrunk to 8cm. She looks aghast. ‘8cm? Mine was only 11mm!’ I remind her it’s not competetive cancer. Cancer is cancer is cancer. She tells me her chemotherapy is made from the bark of a tree. With horrible familiarity I know exactly which drug she will be having and, skipping the horrible side-effects, I tell her it will stop her cancer in its tracks. Mark arrives and we part.

Coming home I get to remove my external accoutrements. My prosthesis, my new compression sleeve. The relief of discarding the improvements is immense. The joy of sitting in pyjamas mis-shapen and puffy-armed is huge. I don’t yearn to go to restaurants, clubs, gigs, the cinema or have dinner with friends. I long for the sofa at the end of the day, pyjamas and sheepskin slippers.